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Volunteer Privacy Notice

Date published: 19 December 2021

Reference: PPV04


At PSC Support, we respect your privacy and take great care with personal information we hold about you. Personal information means information that can be used to identify you, such as your name, email address or phone number.

This policy sets out how we collect and handle information about you when you volunteer for PSC Support.

Who we are

We’re PSC Support, the UK-based charity dedicated to improving the lives of people affected by primary sclerosing cholangitis (PSC). PSC Support is a charitable incorporated organisation (CIO) (registered charity number 1175427). Principal office: 3 Gary O’Donnell Drive, Didcot OX11 6BT. PSC Support was previously registered with the Charity Commission as an unincorporated association (registered charity number 1115615).

Your rights under data protection laws

Under data protection laws, you have a number of rights relating to data protection which can be found on the Information Commissioner’s Office website:

How to get in touch with us

You can get in touch about personal information we hold about you or exercise any of your rights by contacting Martine Walmsley, Chair of Trustees of PSC Support:

  • by email:;
  • by phone: 01235 25 35 45; or
  • by writing to PSC Support, 3 Gary O’Donnell Drive, Didcot OX11 6BT.

Please include any details that will enable us to find your relevant personal information. We may ask you to provide us with proof of identity before any action is taken or information is disclosed to avoid disclosing information to an imposter. Sometimes, these rights are subject to certain conditions and limitations.

If you are unhappy with our response to a data request you have made, you may contact the Information Commissioner’s Office

How we collect information about you

We collect information when you complete an application form to volunteer, contact us to volunteer or are invited by us to volunteer.

As a small organisation, we have chosen to use trusted outsourced online services where this will provide a more secure, efficient service. We may therefore collect information about you via these online services and if we do, they share with us the information you have provided in accordance with their own privacy policies.  These outsourced services include: the provision of email services and data storage.

Looking after your information

The transmission of information over the internet is never completely secure. Although we do our best to protect your information, we cannot guarantee the security of information transmitted to our website and you do this at your own risk. Once we have received your information, we use strict procedures and security features aiming to protect your information and prevent unauthorised access.

We store your personal information using modern up-to-date cloud-based software. Access to your personal information is limited to individuals directly engaged by PSC Support who need access for their role in the charity.  These individuals include staff, volunteers, and trustees, and may also include contractors and temporary staff.  Appropriate security and training is put in place to avoid unauthorised sharing of your data.

Some of our service providers operate outside the UK. This means that your personal information may be transferred or stored at a destination outside the UK. We select service providers carefully, seeking web-based services, encrypted communication, and two factor authentication access controls where possible. We will take steps to safeguard personal data that is being internationally transferred to non-UK countries that do not have approved adequate status. This includes using 'standard contractual clauses'.

We will not pass on your personal information to other organisations for the purpose of direct marketing without your explicit prior consent. We will not pass on your personal information to clinicians or researchers without your explicit prior consent. In certain circumstances, we will pass on your personal information to the police, regulatory bodies or legal advisors in the case of safeguarding, for the purpose of detection or prevention of crime , or if we have a legal obligation to do so.

Why we process information about you

When you volunteer for PSC Support

If you volunteer for PSC Support, we will only use the information you give us to evaluate your suitability for the role and to administer the volunteering arrangement.

If we reimburse expenses to you, we may use banking details you provide in order to transfer the expenses in a timely manner and store them with our bank for future transfers.

You will be referred to in PSC Support documents and reports.

Your personal data comprising of your name, title of your role at PSC Support and your PSC Support contact information such as your email address and telephone number be shared internally with other staff members and with external third parties, including Trustees and suppliers, or partners, in connection with PSC Support activities.

If we want to disclose information to a third party, for example if we need a reference, plan to use an external supplier to run background checks or need to get a ‘disclosure’ from the Disclosure and Barring Service (DBS) - we will make sure we tell you beforehand, and let you know what data we need to disclose to these recipients, unless we are required to disclose this information by law.

Occasionally, with your consent, we will share your name and email address with fellow volunteers, including trustees and other individuals directly engaged by PSC Support, including staff members, and members of groups with whom you volunteer. You can withdraw this consent at any time by emailing

PSC Support has a legitimate interest, and therefore relies on this legal basis, to evaluate your volunteering application fairly and, if you volunteer, to process and administer the volunteering arrangement efficiently and securely as you would reasonably expect. In addition, we need to comply with our legal obligations to process your personal data when necessary, and in some circumstances we will ask for your consent.

When you join the PSC Support Expert Panel

We use online software to manage the activities of our Expert Panel. When you agree to join, we will request your name, email address and up-to-date Conflicts of Interest declaration to allow us to get in touch with you regarding PSC information and research, research applications and progress, to allow independent evaluation of funding applications, and to share the progress of funded research projects. Other members of the Expert Panel will be able to see your name and your email address. Any information we make public is with your prior consent.

When you are a Trustee of PSC Support

We may additionally process personal information you provide to comply with our obligations as a registered charity. Sometimes we will pass information about you to third parties, where we are legally obliged to do so or that are necessary in the course of your agreed Trustee duties. For example, we would confirm personal information you provide to us to the Charity Commission, to HMRC and to banking institutions where you have agreed to become a bank signatory.

As a Trustee, your name will also be included in the PSC Support Directory. We may monitor the use of computer and telephone facilities for purposes such as preventing and detecting criminal acts, investigating unauthorised use, making sure that policies are being followed and for training and quality control.

How long we retain information about you

We will keep your personal information only for as long as it is reasonable to do so or in accordance with our legal obligations.

Access to your personal data

You are entitled to have a copy of your personal data held on you within PSC Support. If you wish to access your data, please email


In the event of a breach of security leading to the accidental or unlawful destruction, loss, alteration, unauthorised disclosure of, or access to, personal information, we will promptly assess the risk to your rights and freedoms and if appropriate report this breach to the ICO (more information on the ICO website).

Changes to this Privacy Notice

If we make any changes to this Privacy Notice that affect you, we will notify you by email.